Using Innovative research methods to explore post-diagnosis support with people with Dementia

How can we explore different methods of engaging people with dementia in research? What do people with dementia think of diagnosis services?

The Forget Me Nots (FMNs) are a team of researchers living well with dementia because of close-knit friendships with others with dementia. Prior to the beginning of this project, they developed a peer support network nurtured by the service, emphasising rights, choice, and interdependence.

Funded by Brigstow Institute’s Ideas Exchange Award, ‘Experiences of Dementia Diagnosis pre and post Diagnosis Support: a co-production approach’, researchers Dr Webb and Dr Dooley held a meeting with 16 key stakeholders from dementia services and groups across Bristol, Somerset and Gloucestershire to explore post-diagnosis support and how the FMNs’ ideas would fit within these services.

In these sessions, three questions were identified as important to explore further:

  1. What support did people receive post-diagnosis and how can this expertise-by-experience feed into new ideas?
  2. How can we make sure everyone has up-to-date information about services, social groups and benefits that is easy to access?
  3. How can we connect people who don’t usually engage with services with beneficial post-diagnosis support?

With this information, the researchers and FMNs decided to take their research further.

What did the project involve? 

The FMNs all experienced isolation following their dementia diagnoses, and overcame it by learning/doing new things. With this in mind, the researchers and FMNs held three different activity sessions to attract newly-diagnosed people to speak about their experiences while doing something new:

  1. An afternoon at a cultural centre
  2. A session with an artist making a creative output
  3. A photography taster course led by FMNs

The sessions were recorded to help the research team watch them back and explore how people with dementia engage with such activities. This helped the FMNs to create a video showing the process of planning and holding the research events, which will help future researchers use similar methods.

Who are the team and what do they bring?

  • The Forget Me Nots, a team of researchers living well with dementia who developed a peer support network nurtured by the service, emphasising rights, choice, and interdependence. They co-led the design of the research and its outputs. They planned the events and activities, as well as the specific questions the whole team hoped to answer in meetings.
  • Joseph Webb (School of Policy Studies, University of Bristol) is a lecturer in social policy whose research interests centre on understanding and improving the way health and social care policy is enacted in practice. This is informed by his background working in disability social care services. He uses various qualitative methods, including conversation analysis, to examine how policy is ‘talked into being’ and to highlight its impact on people themselves.
  • Jemima Dooley (Population Health Sciences, Bristol Medical School) is a conversation analyst, and qualitative researcher who explores care for people living with dementia.

What were the results?

The group thoroughly enjoyed the sessions, with some members going on to purchase cameras and join photography clubs.

The project enabled Dr. Webb to produce a paper in Sage Journals: Everyday Experiences of Post-Diagnosis Life with Dementia: A co-produced photography study